Living with narcolepsy type 2, Lee is currently registered for Disability Employment Services (DES) with her local CoAct Service Partner, MTC.

Narcolepsy type 2 is a lifelong non-curable condition that makes you feel overwhelmingly tired and can affect nearly every aspect of your life. It is a dangerous condition because you can feel excessive, uncontrollable sleepiness at any point in the day, even when you’re eating or driving.

Lee has struggled with narcolepsy all her life, despite only being formally diagnosed when she was 30. By recognising her disability and learning to adapt to it, she can now take back control of her life and find a job that is suited to her needs.

Persevering from the beginning

Throughout Lee’s teens, she found it difficult to find a steady job. As her condition went undiagnosed, she struggled every day to get out of bed and to stay awake throughout the day. Her condition even affected her decision to not take the bus or train­ — but that didn’t stop her from working toward her career.

Lee experienced her first career break when she was 20, when she found a permanent position in real estate, which offered her the flexibility to start work at 10am rather than the usual 8:30am start. She continued to work there for the next five years. Following her maternity leave when she was 25, however, Lee left her position to open a small business with her family.

Lee is now 33 and since her formal diagnosis by a specialist, the past three years have been challenging for her. She was informed that narcolepsy was non-curable and can only be managed through medication. Although at first, she was hesitant about taking medication and being labelled as a person with disability, she knew she had to take a step forward and push her fears aside for her daughter.

I came to terms with the condition when my daughter said something to me that really upset me. She said,“How come you can’t stay awake to pick me up at school on time like everyone else?”. She was five years old and I realised that I have a serious condition – and I wasn’t going to let this condition take over mine and her life.

— Lee

Finding the right support matters

For Lee, it was important that she found the right support so that she could focus on the things that mattered, like her daughter, rather than worrying about job insecurity. When she found her local CoAct Service Partner MTC, she was advised that joining Disability Employment Services (DES) might help her find an appropriate job for her condition.

They supported me mentally – understood my conditions and did not force or push me into roles unsuited for me. They were patient and were always making sure I wasn’t feeling pressured.

— Lee

Since Lee’s diagnosis and through the support of MTC, she has learned to view her condition in a different light. She learned that she had always sold herself short, not addressing her condition, that her constant naps were not because she was tired or lazy.

She has a deeper understanding of the stigma around disability and is now choosing to find ways to work with her condition. She is now willing to openly speak about her condition to employers, accepting it as a part of her and no longer being ashamed of it.

Accepting help used to be a huge issue I had — especially with strangers. After MTC’s experience and support I realised that I need to give people a go, as people do care.

— Lee

Lee is currently branching out into different sectors in the workplace. She is looking to upskill herself and find employment in a supportive environment where her condition will not affect the quality of her work. Lee is also giving back to the community by volunteering for Dress for Success Sydney — a charity that improves the employability of women in need in NSW by providing professional clothing, a network of support and career development tools all free of charge.

Be supported by a team that believes in you

If you are struggling with your confidence, feel lost in your employment journey, or would like some additional support in your job search, the team at CoAct can help. Contact us today to find out how we can get you on the path to success.